British Medical Association: "Known unknowns, and as yet medically unexplained diseases" by Dr David Strain

Lou B Lou said:
"Where, then, do we place conditions diseases that we don’t as yet have diagnostic tests for?"
NHS Page for Parkinson's Disease (I assume the Parkinson's Disease NHS Page is more accurate than the NHS page for ME):

'No tests can conclusively show that you have Parkinson's disease. Your doctor will base a diagnosis on your symptoms, medical history and a detailed physical examination.
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Parkinson’s disease has very clear neurological signs and symptoms, the pathology has been researched and clearly shows the death of dopamine secreting cells in the basal ganglia and is improved by giving dopamine based medication.

Many neurological and psychiatric disorders eg. Schizophrenia also have no blood tests to confirm diagnosis so are diagnosed on established criteria based on years of research and consensus within the medical specialty.
 
chrisb said:
I know that ,but they did not come up with a case definition until 1987 or 88 and there is no reason for a UK based doctor to believe that Tahoe was of any greater significance than other outbreaks. There are even those who think the epidemic outbreaks are not entirely relevant anyway. That is debateable. Making nature conform to human concepts is a tricky business.
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Yes, agreed. And, as a you have commented extensively on the history of ME (cfs) on this forum, I know you know that! :)

I did wonder about a UK doctor giving such significance to a US epidemic. I would go with Melvin Ramsay's writings myself, and maybe go further back than that to other authors to add more background. But, definitely choose Dr. Ramsay, and his early writing on ME.

The history of ME is at one time fascinating and horrifying.
 
SNT Gatchaman said:
In Could SARS-CoV-2 Spike Protein Be Responsible for Long-COVID Syndrome? is the paragraph:
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The existence of MCAS seems pretty dubious to me and any relation to symptoms like Long Covid even more dubious. That looks like gossip science to me.

Mast cells are everywhere so being in brain or near this cel or that tells us nothing. They are near all cells.

I am afraid that most of this sort of literature is just random speculation based on pretty naive ideas about immunology.
 
The article makes a number of useful points but as others have said I am not sure that having no diagnostic test has much to do with the problem of adequate care for ME, or much to do with it being unexplained either. Parkinson's has no diagnostic test but is explained by loss of dopaminergic neurone. Schizophrenia has no test and is unexplained. And explanation is as long as a piece of string anyway.
 
Jonathan Edwards said:
I would be interested to know where the atopy bit comes from.

I looked up atopy and as I expected found this:
Asthma, allergic rhinitis, and atopic dermatitis are almost invariably accompanied by elevated levels of IgE.

If that is true someone should have found elevated levels of IgE associated with ME/CFS, even if only on an average basis or in a greater proportion than normal controls. Lots of studies have looked at basic immunological measures like this and as far as I know there is no link to IgE level s in ME/CFS. If there is I have missed it.

It would be good to get this clear, because the atopy link is often banded about and if it were true it would have major implications for the way one ought to view mechanisms.
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It goes back to earlier 'certainties': Allergy and the chronic fatigue syndrome Scihub link: https://sci-hub.se/10.1016/0091-6749(88)90933-5

The allergy link has certainly been reported by patients and I think it was taken as a given for a long time within patient orgs, groups and fora that allergy is indeed part of ME/CFS, but as with so much else I don't think it has ever been properly assessed epidemiologically.

My own experience is that allergy onset was closely linked to onset of permanent ME/CFS symptoms and so for me the two go together - but onset may be coincidental and comorbidity results in a ratchet effect where allergy adds to general ME/CFS crappiness. As allergy is now so widespread in developed countries we should expect high numbers of ME/CFS patients to report allergy and to report that allergy worsens their ME/CFS symptomolgy, without that implying a common pathophysiology.
 
Quite some time ago, it seemed common knowledge in ME circles that if being atopic preceeded ME, then one's allergic condition would be more likely to worsen with ME. Mine did.

As well, information at that time said atopy was seen to develop with the accompaniment of ME.

I'm not saying these ideas are correct. Just what was said at the time. And, still seems to be the understanding, although conclusive evidence appears lacking.
 
On the issue of atopy, it hasn't been formally researched a lot, but this must be explained. This was from a survey where Gez asked long haulers about some basic history and got this result:

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Of course a previous course of PVFS is a larger risk factor, but would need a more representative sample to be more accurate. What's sad is that medical records can't even be used retrospectively here, since a tiny % of PVFS is ever recorded properly. Way to go, medicine! Making the present worse wasn't enough, had to make the future worse, too.

Link to post with more details: https://www.s4me.info/threads/news-...e-cfs-2020-to-2021.14074/page-121#post-299766.
 
rvallee said:
On the issue of atopy, it hasn't been formally researched a lot, but this must be explained:
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If it was an online survey it is easily explained by ascertainment bias, which is likely to be major for questions of this sort.

There is also the issue that he is presumably asking about people who have continued to be unwell following Covid for a period of months. My experience of both my wife and I being ill for about five weeks makes me think that, like EBV, Covid may just be an infection with a long tail to it for a lot of people. That doesn't necessarily have much to do with ME/CFS in the sense of an illness that hangs on much longer with no signs of gradual disappearance.

It does sound as if there are people who have typical ME after Covid - in the sense of continuing to be disabled without much sign of change for over a year, but they may be a small group compared to a 'PVFS' group that resolve in the way it did for EBV and Q fever in Dubbo.
 
Jonathan Edwards said:
It does sound as if there are people who have typical ME after Covid - in the sense of continuing to be disabled without much sign of change for over a year, but they may be a small group compared to a 'PVFS' group that resolve in the way it did for EBV and Q fever in Dubbo.
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To take the UK as an example, with the total number of confirmed cases of COVID over two years amounting to one third of the population, it becomes very difficult to separate new cases of ME/CFS following COVID from new ME/CFS cases comorbid with COVID.

We don't have incidence figures of ME/CFS for the UK but 10K+ seems reasonable - that's 20,000+ who statistically would meet a new diagnosis of ME/CFS during the COVID pandemic without any need for COVID to play a role. With something in the region of a third of those 20,000 having a confirmed COVID infection and another third likely to have had an unconfirmed/asymptomatic infection there would be 13,300 newish ME/CFS patients with a COVID association, 6,700 of whom might place ME/CFS onset post COVID exposure. To see any true COVID > ME/CFS numbers we'll need to have evidence for excess over normal.
 
Jonathan Edwards said:
That doesn't necessarily have much to do with ME/CFS in the sense of an illness that hangs on much longer with no signs of gradual disappearance.
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On the other hand, it may have a lot to do with ME/CFS. I'm inclined to viewing at least some of the slow recoveries from Covid as being on a continuum where ME/CFS sits at the 'extremely slow to non-existent recovery' end. This is because of the experience of my family, where three of us had similar symptoms but one eventually recovered.

The idea that people might have had (multiple) prior experiences of post-viral fatigue syndrome is an interesting one. I was sick for a year when I was a child with what was diagnosed at the time as ME. But, when I got glandular fever and shingles together when an adolescent, I recovered within a week or so, and subsequently I didn't take longer than normal to recover from other significant infections. I think it's an issue there hasn't been much research on - i.e. do people with ME/CFS have a history of slow recovery from illnesses?

CRG said:
To take the UK as an example, with the total number of confirmed cases of COVID over two years amounting to one third of the population, it becomes very difficult to separate new cases of ME/CFS following COVID from new ME/CFS cases comorbid with COVID.
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I suspect a lot of people will be opting for a Long Covid as opposed to an ME/CFS diagnosis where there is any greyness at all. Why would you not? My sense is that social acceptance, as well as government support, is, or at least will be, much higher for Long Covid in a lot of countries. It therefore becomes important for ME/CFS charities to clearly offer Long Covid support services and not insist on only serving ME/CFS.
 
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This is the reason I do not think that longcovid is the same as ME, though you call it CFS I suppose. It can take up to 2 years to recover from different types of infections especially EBV and flu then you have recovery from any damage caused by covid. I was not right for about 5 months after a corona virus before covid and know other people who were ill for a prolonged period after flu and giardiasis.

It is hopeful that many, if not most of those with longcovid will recover in that time scale. The ones left are the most likely to have ME but if we are not careful there will be inflated figures for recovery in ME.

It is possible that ME is caused by viral damage to a certain system, like developing deafness and if so, a diagnostic test may be able to pick it up much earlier after an infection.
 
I've heard a lot about this "science follows the evidence" thing. I'd love to see it in action one day, it's very slow going. Because it may be mere correlation, but there's no shortage of evidence to follow, if only bureaucratic paralysis could just stop getting in the way, and possibly stopped wasting resources on pet projects.

 
Mithriel said:
This is the reason I do not think that longcovid is the same as ME, though you call it CFS I suppose.
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Sorry, this was typos and missed bits so it sounds scornful of people who feel ME and CFS are the same. We have had that discussion often and this was not meant to be part of it. Been crashed but not enough of an excuse if I upset or offended anyone.

I was trying to say that biopsychosocial types who reduce ME and CFS to simple fatigue that lasts for 6 months and call it CFS/ME may think they are the same but that would be for all the wrong reasons. If some cases are identical to ME/CFS it will because of a shared biology.
 
The 1984 stuff probably relates to this research
"Persisting Illness and Fatigue in Adults with Evidence of Epstein-Barr Virus Infection"
https://www.acpjournals.org/doi/abs/10.7326/0003-4819-102-1-7

"Chronic mononucleosis syndrome"
https://europepmc.org/article/med/6093268

"Chronic Epstein-Barr Virus Disease: A Workshop Held by the National Institute of Allergy and Infectious Diseases."
https://www.acpjournals.org/doi/abs/10.7326/0003-4819-103-6-951

The name seemed to morph from Chronic EBV/mononucleosis syndrome/disease was combined with post-viral fatigue syndromes into Chronic EBV fatigue syndrome and then the EBV bit was dropped when it was found that some people did not have their symptoms triggered by acute EBV infection.

This soup of names certainly reminds me of the soup of names associated LongCOVID!
 
That is an interesting idea, but hadn't Straus virtually disowned all this ,and the associated names. The cases involved were no doubt of a similar nature to ME. But there seems no reason to select this as any meaningful starting point.
 
Jonathan Edwards said:
I would be interested to know where the atopy bit comes from.

I looked up atopy and as I expected found this:
Asthma, allergic rhinitis, and atopic dermatitis are almost invariably accompanied by elevated levels of IgE.

If that is true someone should have found elevated levels of IgE associated with ME/CFS, even if only on an average basis or in a greater proportion than normal controls. Lots of studies have looked at basic immunological measures like this and as far as I know there is no link to IgE level s in ME/CFS. If there is I have missed it.

It would be good to get this clear, because the atopy link is often banded about and if it were true it would have major implications for the way one ought to view mechanisms.
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Agree it would be good to be clear.

I do (and know others too), but it wasn't discovered in the 'CFS diagnosis' process - so chance is the tests just aren't being done and the disease correlations aren't being checked for (I imagine asthma is the only one that is a 'flag' so the others can be lost in the descriptive notes and never but on the 'history' as mine only ever has included certain things). Or it could be one of those awkward types, stages, or seen as irrelevant up until now because is explained by having one of the above etc.
 
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